byLUCINDA PORTERonJANUARY 22, 2015I lived with hepatitis C for 25 years. During this time, I accumulated quite a bit of experience, not just from the patient’s perspective, but also from being a nurse who has worked in this field since 1998. Three rounds of treatment, taught me a lot about hepatitis C, including how to look failure in the face and keep going. It paid off, since I’m now cured.Drawing on my experience, I compiled a list of important steps to take if you have hepatitis C:1. Be sure you have hepatitis C. This may sound odd, but I know quite a few people who thought they had hep C, but didn’t. This is because they were told they had the virus based on an antibody test only. Approximately 25% of those who test positive for hepatitis C antibodies don’t actually have the virus. They were exposed, but their immune systems fought it off naturally. A viral load test will confirm whether you actually have hepatitis C or were merely exposed to it.2.Get regular medical check-ups. Hepatitis C patients are generally seen every six to twelve months, depending on how they are doing. If you have cirrhosis (severe scarring of the liver), you will need more frequent medical visits. If you don’t have insurance, consider coverage under the Affordable Care Act or look for free or low-cost clinics.3.Discuss hepatitis C treatment with your doctor. Hepatitis C is curable almost all of the time. Treatments are now shorter and much easier to tolerate.4.Protect yourself from hepatitis A and B by getting immunized. If you have had either hepatitis A or B, then you don’t need immunization for whichever one you had.5.Do not drink alcohol. If you can’t stop alcohol or other drug use, get help.6.Avoid raw or undercooked shellfish. Do not eat non-commercial wild foraged mushrooms.7.Talk to your doctor or nurse about the safe use of acetaminophen (Tylenol). Never exceed recommended amounts, and be sure you include acetaminophen from all sources when calculating your usage. Acetaminophen is found in hundreds of prescription and over-the-counter drugs, such as cold, cough, sinus, sleep, and pain medications. Most liver specialists tell patients not to exceed 3000 mg daily (taken in divided doses—not all at once).8.Everything passes through the liver, so know what you are taking. Do not use iron supplements or multi-vitamins with iron without discussing it with your doctor. Too much iron can harm the liver. Tell your doctor everything you take, including herbs, minerals, non-prescription drugs and prescription medications.9.Educate yourself about hepatitis C. Many excellent websites provide solid hepatitis C information.10.Join a hepatitis C group. Community and web-based groups can be sources of support, information, and tips for healthy living with hepatitis C. Choose groups carefully, looking for participants who are knowledgeable, kind and who respect confidentiality.11.Learn how to avoid transmitting hepatitis C to others. For instance, clean up blood spills, cover wounds, don’t share items that can come into contact with blood, and don’t donate blood. TheCenters for Disease Control and Prevention(CDC), theHCV Advocate, andHEPwebsites have information about hepatitis C transmission. Although hep C is potentially infectious, do not become obsessed with this. It is rarely passed causally. Learn how to lower the risk, and do your b12.Stay fit. Maintain a healthy weight, choose foods wisely, sleep 7 to 9 hours a night, stay well hydrated, and find a daily exercise program that is reasonable for your capabilities.13.Keep copies of you medical records, especially current lab and biopsy results. Carry info in your wallet or purse listing your medications along with your doctors’ names, address, and phone numbers. Smart phones apps are excellent ways to store information, but be sure these are secure.14.Start slowly. It can be overwhelming to learn about hepatitis C and to make life style choices. Take baby steps and build on your successes.15.Enjoy life. If depression or anxiety is interfering with your ability to experience pleasure, talk to your doctor or mental health professional. Learn how to manage stress. Spend time with people who make you happy. Listen to music. Follow the longings of your heart. Keep a positive attitude. Incorporate humor into your daily health practices. If you aren’t happy, learn how to become happy.For more information about how to live well with hepatitis C, the HCV Advocate website offers free information, including, “A Guide to Healthy Living with Hepatitis C.”http://www.lucindaporterrn.com/living-hepatitis-c-15-tips-nurse/

Lucinda,
Thank you for the insight. I am interested to know what were your experiences with your healthcare providers throughout your HCV infection and treatments. What are some of the obstacles you faced and fears you had? As a healthcare professional what can I do to continue to improve the care that I give my patients?

Amanda,
That is a tough question. I can’t separate being a patient from being a nurse, so I will just touch on a few things that I think many of us share. We may not fear death, but we wonder if hep C will kill us, and that leads to the painful question of what that might mean to our families. Probably the biggest burden is our fear that we will infect others, esp our children. Treatment brings up a lot – will we have side effects, will it work, will be able to pay for it, can we work, will our doctors prescribe the right meds and follow us through it.
What can you as a healthcare professional do to continue to improve the care that you give your patients? The fact that you ask, speaks volumes. Other ideas:
1) Give them tools – good info and places to get support
2) Let patients know you will be there to help them through treatment
3) Provide an opportunity for them to ask the hard questions. When the appointment is over, they may still have hep C, but if they have unburdened some of their biggest fears, healing has begun